F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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linefine
Today, H & I went to talk to our GP about our D, without her.  She knew we were going and didn't make any comment.  We took various printed literature for him, which he was pleased to receive.  We explained that we are re-feeding and trying to follow the Maudsley approach, but as D will not consent to see anyone but him (and that only 10 minutes per month) we are having to do it without expert help.  We talked it all through with him and said we really need him to be reading off the same page if it's not all going to go belly up. 

He was very nice, and agreed with virtually everything.  We asked him to please not tell her she was out of the woods re weight at any time without discussing it with us first, which he agreed to.  Our D, rather surprisingly, has told him she is happy for him to share everything she has said and he has said with us until further notice, so we are very encouraged by that.  He shared her blood results and ECG results with us (all good) and we felt a lot better after that.  

D is doing well, eating everything with little resistance bar a grimace and sigh every now and then.

I bought her a packet of Maltesers today because she said she fancied them, and a book she wanted, and when I got home I went to her room and said, "I've got 2 presents for you".  Her face fell, she sighed, and then said, (resigned to the dreadful inevitable voice) "It's not food, is it?"  Poor love, I did feel for her!
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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sk8r31
Very encouraging to hear that your GP is willing to learn & support you & your h through the ED battle.

We also had an MD who was fantastic; took everything we gave her, and made copies for every other professional in the office.  A physician who is truly able to partner with parents is a wonderful thing!

There is a wonderful video by the well-respected Dr. Rebekah Pebbles called 'What Pediatricians and Parents Should Know' and it might be worthwhile to provide the link for your GP.  I have included the link here

Hang in there!
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Torie
linefine wrote:
....I went to her room and said, "I've got 2 presents for you".  Her face fell, she sighed, and then said, (resigned to the dreadful inevitable voice) "It's not food, is it?"  Poor love, I did feel for her!


So glad to hear the meeting with the GP went so well. It;s great that you took plenty of information with you.

Hopefully this won't be true of your d, but many here (raises hand) have found that our Ed-kids have a terrible time accepting presents or anything new for themselves. Some wise soul here advised us to be sure to give them new things even when they say they don't need / want anything. Of course, it's also likely that your d was really just afraid it was food and didn't feel like she "didn't deserve" the book. In any case, maybe someone reading this will find the anecdote useful.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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linefine
Following encouraging visit to the GP, I've just had a wonderful conversation with a lady from CAMHS.  Have been feeling a bit uncomfortable that we're doing all this more or less without any medical supervision.  (The GP knows not very much about ED, so we were educating him rather than the other way round....)

Conversation went something like this;
Me - We're more or less following Maudsley, I think.
Her - Can you explain what you mean?
Me - We're re-feeding (followed by detailed explanation of what we're doing)
Her - That's very good.  That's what we would tell you to do.
Me - What about.....(various scenarios) This is what we do ....
Her - That's excellent, and exactly what we'd recommend.
Me - So if we saw a therapist, they would do family therapy, a la Maudsley?
Her - Yes, we follow Lock & Legrange
Me - So no-one would start saying it might be the parents' fault or anything like that?
Her - Good Heavens, no! I really don't know why anyone ever allowed that sort of thing, it's so damaging!
Me- And is it ok if I call you personally if I need some help or have any questions?
Her - Yes, of course!  Feel free any time 8.30am - 4.30pm, Mon-Fri
Me - You are my life-saver, my new best friend and I love you (I didn't say any of that, actually, but thought it.)
Her - I'm so impressed - you're doing an excellent job!

Not so good is that at present D is refusing to see anyone, and that the CAMHS ED "team" at the moment consists of 1 and a half people rather than the 7 they should have, and if D agrees to referral, it would be to the generic CAMHS team, rather than the ED specialist team, but they would be closely overseen by the ED team.

Another encouragement (in a funny sort of way) was that I have wondered a few times if we're making a mountain out of a molehill, as so many people here have kids with really low BMI, and are really sick, whereas our D has a BMI of 16.5, and is eating and gaining weight, also has no issues with weight gain.  

(I do know, by the way, that 16.5 is way too low!)

But when I told the lovely lady her weight & height, and described some of the things she does & says, she said, "Oh yes, she's very underweight, and those things are so typical".  Funnily enough, I was quite encouraged by that!  

We're doing the right things.  We're not making it up.  She's sick and we're helping her. 
Heather

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonour others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always PROTECTS, always TRUSTS, always HOPES, always PERSEVERES. Love never fails.
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Sotired
Just to further validate that, my ds BMI is 17 and she is very sick.so it does vary from person to person about how sick they get at different BMI numbers and different weights.just keep on fighting the good fight.providing your gp with info is good,getting your d to those checkups is necessary however.make sure he does the orthostatic one.sometimes to get my d to the hospital I would get my sisters to come and help,so don't have any compunction in calling on help if necessary.you can do the same for doctor visits.i hope that the weight is going on and that as your confidence builds you are able to figure things out through the setbacks.
Now I don't want to alarm you,but sometimes they can appear very compliant but are not.its just part of the illness.so make sure she is not hiding food whilst she's eating (up sleeves in pockets and the waistband of her clothes) and that she is resting between meals for at least an hour.watch out for purging.this illness requires a level of intrusiveness I wouldn't have believed before I lived it!
You are doing a great job,
Sotired42
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schnook
linefine wrote:
We're doing the right things.
We're not making it up.
She's sick and we're helping her.


So much YES to this. All power to you.
Working hard at meal support and WR for an anxious and food avoidant 6yo
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Torie
linefine wrote:
...Me - You are my life-saver, my new best friend and I love you (I didn't say any of that, actually, but thought it.)


Linefine, it gives me such joy and relief to read your post! What a weird time we live in, where a few providers really come through and help us, but many, many more of them are still cluelessly undermining us.  So so glad you happened upon one of the good ones. I bet you will sleep better tonight.

xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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JustFlippinEatItNZ
You are doing amazingly well, lifeline! Sounds like your understanding and your treatment decisions are spot on, and it's awesome that you have a team who support you in it. :-)
19yo D, AN since Sept 2014. Was wt restored for a year or two but now starving again, refusing treatment or to admit she has a problem. BMI guesstimate around 13 or 14. Has left home.
Very sad Mum.
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